Newbie to the site

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my marriage. My husband has been put on a roller coaster and has tried hard to understand all of this, but I am better, but not cured. I have had so much pain during intercourse, im so uptight anytime the topic comes up and worried about if it will hurt or not, I pretty much err on the side it will.

I struggle to understand why this effects so many of us. I have to use vsnicream soaps, dye free and fragrant free everything and the slightest thing will set me into a dermatitis nightmare for days... then comes the lidocaine. The only thing I can even think of that changed anything about my vagina was my Leep procedure when I had cervical cancer.  Anyways, thanks for letting me rant.

HI KSA,

I am new to this site just like you. I am not new to vulvodynia though.... I have had it for years and I also had a LEEP procedure done. I have been married for 18 years and I dont know how my husband deals with me. All I ever talk about is my v and how I hate it. He is a patient man. 7 days ago I went through with the vestibulectomy and am praying it works. Do any of the creams you are on work? I am so nervous about using anything down there due to side effects. I believe this condition is linked to hormones and nerve endings, but no doctor will listen to me. The reason why I think it is connecting to nerves is because I get burning skin on the front of my thighs for no reason. It feels like I have sunburn. They have to be connected in someway. Have you tried a nerve block? I am going to demand one if the surgery doesnt work.

Hi, I am a new Member.

I have had Vulvadynia for 16 years. I saw many Gynaecologists and Professors, I have seen 3 Pain Specialists and used to go to vulval pain clinic.
The Pain clinic signed me off 5yrs ago after telling me, I probably know more about it than they did and I’m taking the only Treatment to control it and there is nothing else anyone can do for me. It’s a Roller Coaster ride, some days it’s Dreadfull and some days not so bad.

I have not worked or had an income in 15yrs due to my Condition.

It ruined the Relationship I was in at the Time and although I have met and Married a Chap since, Sex is a thing of the past.

I am 59 this year and the thought of Old Age with Vulvadynia is worrying....

I have never met or spoke to anyone else who has Vulvadynia and I’m hoping to meet others like me to exchange Views and Tips and generally talk to another Female who actually gets what I’m saying ????

Hopeitworks- are you using any steroid creams? I know one that I use thins the skin so when my thighs get some on it they hurt and feel really sensitive. That being said I definitely think that vulvodynia is connected to nerves. My dermatologist explained to me that it's kind of like the aftermath of shingles. Everything can "look" fine, but you still feel pain/itching when you shouldn't.

Jan1959- it's so hard to find the right doctors who actually know of conditions like this. I do love this website because it's so hard to find others who know exactly what you're going through. What are some of the treatments that you tried at the clinic?

Hi Ryn,

I take 50mg Amitrptalyn every night and I sleep 10-12hrs a night as a side effect. When I get a flare up I use Lidocaine Gel 5% it’s the strongest in can get in Uk from Dr.

I never use Soap or Washes of any kind as I try to Avoid BV and Thrush as much as Possible. I’m at that Age where ICU are a Problem and I’m trying out Alkaline Waters at the moment to see if I can de Acid my Urine a bit....

I buy Coconut Oil and I mix it with Pure Dead Sea Salt, which I use as a Scrub to Bath in. Its works well, isnt expensive to do and I mix it fresh every time I Bath.

I have had Vulvadynia so long it’s part of my life and I try to just get on with, it’s not something you can Talk openly about and my Husbands Family just act like there is nothing wrong with me.

I had a Hysterectomy at 29 for Endometriosis and hav3 no Family of my own.

I had a Laparroscopy and they removed my Ovaries and a lot of adhesions after I got Vulvadynia, thinking that was the problem. Didn’t Help.

I also had a miss shaped Bartholins Gland which was Filling up causing internal Cystes. They Drained it 4 times then Removed it. This has left me with Scar Tissue which sometimes Throbs.
They told me that got all the Gland they could find but it Didn’t Help my Vulvadynia.

So I have had 7 Ops in 7 years during the 16 years while I have had Vulvadynia so I appreciate how hard it is for those going under the knife in an effort to try to get Better.